Spirituality

There has been a fascinating discussion recently on the Inspire EDS Forum about the spirit/mind/body connection. The initial poster had been really distressed by her “New Age” friends basically telling her that she was choosing to be sick and asking what she was getting out of it. They went on to say that if she were more positive in her outlook she would be well. No wonder she was upset. I would have gone much further, kicked them in the shins and then asked what they were getting out of feeling pain!

As you may have noticed, I get a bit arsy when people comment on my blog that if only I tried x, y or z (usually food related, though supplements rank right on in there) that I’d be cured. I’m not sure which part of “genetic connective tissue disorder” they’re not understanding, or the fact it’s my EDS that is causing my mast cell issues. I’m not sure how x, y or z is going to magically make my tissue, faulty since before birth, suddenly ‘normal’.

Over the years I’ve heard people wax lyrical about the gifts ill-health gives them, and about how lucky they are to have slowed down and are now able to appreciate the little things in life, such as the sound of a wild snail eating. Me, I don’t like snails – disgusting little creatures that decimate my plants and leave slimy trails all over my patio. I don’t want to slow down – I’m in my forties not my eighties. I want to travel, get giggly on cocktails and dance into the early hours on an exotic beach somewhere preferably in the arms of a very tanned, very handsome single man. I want to eat what I like. I want to have the energy to help my ill and aging parents out more. I want a functioning brain. I want to not live in abject terror of my next food, drug or environmental reaction. I want to be able to sleep at night. I want to wear heels. I want to not be depressed, and angry and anxious. I want a working memory. I want a lot of things I know I’ll never have.

Don’t get me wrong, I watch Oprah. And after her Soul Sunday programmes I feel a warm glow and a renewed sense of living in the moment. Until I realise my ‘moment’ holds some serious levels of pain, nausea and fear that I’d prefer not to focus on. Living in the moment is nice, if the moment is nice. I’m not sure what lessons 35 years of chronic pain is supposed to be teaching me that I haven’t already learned. Actually, I do know. Absolutely bloody none. I am a Warrior who has grown weary of the battle.

I have done the whole Asking the Universe thing. I wrote down a list which included:

money to build assisted housing for single people with severe M.E. (I don’t really need money for myself, although employing a Carer would help no end)

a husband (would God have really created me to be the loving, sharing, caring, person I am if he meant me to live alone for my entire life?)

and better health (I tried not to be greedy and ask to be cured as I realise this is unrealistic, and in fairness most of my wish for better health is so that I can help my parents and sick friends more).

I haven’t received any of it. Is that because I didn’t ask properly? That my intention wasn’t honourable enough? I have not magically been guided to brilliant caring doctors, or sources of help and support. I’ve found them because I’ve worked tirelessly at finding them – nothing has landed in my lap from the heavens. I feel forsaken by God and the Universe and wonder what qualifies one person for divine intervention and not another.

There are lots of platitudes about faith and spirituality that are banded around sick people. One of my favourites is “what doesn’t kill you makes you stronger”. What a crock of shit. My illnesses have, over the years, worn me down to such an extent that death would at times be preferable. Or there’s the very simple “when life gives you lemons, make lemonade”. Well that’s me buggered then, being as though citrus fruits are histamine liberators 😉 . Another favourite is “God doesn’t give you more than you can handle”. Hmmm, try telling that to Lynn Gilderdale whose pain from years of having M.E. was so intolerable she took her own life. And my all time Oprah favourite “your thoughts create your reality”. Maybe my Mom’s Mom’s Mom (or whoever started our chain of genetic defects) meditated on giving her descendants a chronically painful genetic disease while she was pregnant – because that’s what that little pearl of wisdom really means.

Yes, Oprah is a truly amazing, inspiring person. But to say it’s all down to faith and thought is like suggesting all the millions of poor, black kids the world over who smile their way through abject poverty and go to bed at night faithfully asking God to make their lives better just aren’t doing it quite right. Or enough. Which is another crock of shit.

I have not done some horrendous karmic thing in a previous life to be landed with a crappy life this time round. The karma thing doesn’t even make sense. A child who is still-born hasn’t had chance to either do something wrong, or to make amends. It’s a load of utter tosh.

I’m not saying that attitude is unimportant or that our thoughts don’t affect our physical health – I only have to think about starting a new drug and my body physically goes into panic mode, with very real palpitations, sweating, clenched muscles and paralysing anxiety. But to suggest that thought alone creates reality is laughingly absurd. My whole childhood I imagined I’d be married, have children, be healthy, and live a happy, sustainable life on a small holding. I absolutely didn’t imagine a life of abject loneliness, constant pain and suffering, and barely being able to make a bowl of Cornflakes let alone dig an allotment. This life was the furthest thing from my mind, so how did I attract it into my reality? The simple answer is, I didn’t.

We need to stop blaming sick people for not being positive enough, or not having enough faith, or not being optimistic enough, or not being mentally strong enough. No-one would choose this life and I personally would forego all the ‘lessons’ its taught me if I could wind the clock back and have lived 46 healthy years instead of 46 sick ones.

The positive thinking brigade constantly tell us that this moment is a gift, that’s why it’s called the present. I’d like a refund please, or at the very least a Gift Card so that I could choose a different life!

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14 thoughts on “Spirituality”

Wow. You said a lot there. Much that most of us can certainly relate to. You know… yours (and a young minister who talks in “a language” that makes sense too me – I think I am renewing my faith) are the only two blogs I follow, read and comment on. I comment on your posts in particular, not because I want to be heard, not because I want to preach to you, not because you owe me anything…but because, although we are a continent apart, you fuel me with food for thought and I feel so in tune with what you have to say – it mirrors my own experience so darn closely.

As I have previously mentioned, I am a relatively young woman who stepped out of an active life many years ago. Forced out by illness. I have been told to “think positive thoughts”, “fight the good fight”, “hang in there”, “you must have more fight in you”, “you are self-absorbed and angry – anger may not have caused your illness but it sure is making it worse – let it go and you will feel better”, “you can’t be in pain ALL the time”, “are you sure you are not simply depressed?”, “how can you have seen so many specialists and STILL be without a diagnosis?”; “maybe you are simply not eating properly”, “how could you have had so many tests but nothing has been detected?”, “maybe you just don’t handle pain well”, “find Jesus”, “you’ve changed since being sick”…that last one is most hilarious…no shit Sherlock! And I have met many unskilled, unfriendly, condescending, righteous, negligent, heartless, bored, and bullying doctors. And the few genuinely kind ones, who seem initially eager to help, grow weary and change their tune very, very quickly when it becomes apparent that my predicament is an elusive one…as has been the way of friends and family who no longer know how to deal with me…preferring to stay away and be silent. It is, this agonizing journey through illness, as I may have said in an earlier reply…a solo flight.

But, I am guilty of referencing the “being in the moment sentiment”…as this practice has saved me from insanity more than once. Works occasionally for me…not always….not nearly like I’d like it to. I practice meditation, when I can, when I can manage. With this horrific illness, I, at times, have plummeted into depths of despair that I had no idea I could get to; where darkness weighs me down; way down; as if I were drowning and watching the receding light of a distant sun as I sink; as if I were a lethargic slug of some sort…no, not even a slug as even a slug is more productive than I at times.

There is a line in a Leonard Cohen song that says “You say I took the name in vain, I don’t even know the name… but if I did, well, really, whats it to you? There’s a blaze of light in every word it doesn’t matter which you heard…the holy or the broken Hallelujah…” I love the line “there’s a blaze of light in every word.” To “be in the moment” sounds so freakin’ trite. But it is a useful way of being for me when I remember to practice it – I usually remember to do so when I become suitably overwhelmed; when I am in the knowing that I have been abandoned by the folks I thought would always be there for me (like friends and, more recently, siblings)…and when the idea of death seems like it would absolutely be a blessing (I have even prayed for death)…these are the times when I am so low I go…momentarily mentally numb and the moment has room to come alive. And there are times when a toxic build-up is so bad, that I find a place of acceptance through pure…stupor.

Pardon my use of language in this reply but sometimes the idea of “being in the moment” seems like shitty torture. But…yup..I said but…it is “in the breath of the all consuming moment; be it judged by me as good or bad or neutral” that I remember that I, not you, no, I am not trying to convince you of anything nor suggest you are ungrateful nor anything for that matter…I am speaking purely of my own experience here that, during extremely physically and emotionally trying moments (which is daily)…I slowly but surely remember that for every stinkin’ moment this life affords me, I want to try to be grateful, happy, try to search out joy, try to be kind and generous…and all that cupcakes, kittens, and ribbons; vibrant, active and functioning stuff that we perceive to see happening without us. F- it, I deserve that kind of love. At times, although not with a rare few who are refreshingly authentic, I want to scream “shut the f – up” to the folks who say stupid or uncaring things. I dig deep for patience and energy to withstand those who, despite their best intentions, offer up examples of their own symptoms as a form of trying understanding, offer up unsolicited advice, expend energy on petty grievances, and/or take their health for granted (something I also did before being sick)…but, deep down that fluffy happy/joy/kind/generous stuff IS WHAT I WANT…and the ONLY WAY, for me, for the time being, to live those intentions, with or without decent health, with or without the support of strangers, friends; family; community; medical staff…is for me to become aware of where I am; both physically and emotionally – as often as I can – cause if I don’t do that…well, I don’t really know of course…but my negative angry sad hopeless self will likely consume me…and continue to slowly kill me from the inside out (just a depleting force with a different face).

In the end, as a solo participant, all I have is my spirituality (whatever that is in any given moment) and MY way of being – I’m working really, really hard to keep it all in balance (it being my sanity and my sincere desire to live in and with grace, despite my deteriorating health). Without a doubt, we are challenged with finding balance…whatever that means to each of us…and by the shear truth that we are still breathing, we must find our own way of coping each and every day. How we do it…what we believe…how we live…what we think…what we choose to eat, use, develop, and practice…is a personal choice and cannot be forced upon any one individual – it is a far too personal choice.

But , it is my opinion, that we are creatures of ferocious habit and we forget to just be quiet once in awhile – quiet enough to create a crack and let the light in as Leonard would say…whatever light that may be in our individual life experiences…”there is a blaze of light in every word…it doesn’t matter which you heard…the holy or the broken…”. It is always up to you in the end (as of course you know)…whatever you decide is useful to you…interpretation varies and meets change daily, hourly…but the most delightful thing I have learned; and yes, my revolting illness thrust me toward this learning…is that nothing, nothing at all, lasts forever. Yippity freakin’ Yay!

Finally, it is difficult to express oneself accurately emotionally via writing like this – and misunderstandings can occur. To be clear, I am not imposing any way of being on you – I am not preaching the glories of “being in the moment”. I am just throwing my two cents in ’cause I am struggling to find the will, at times, to carry on – and it is because of this – that I speak so…so candidly and passionately…reducing my filtering is the thread I am hanging onto for dear life. I hope I don’t annoy you with my lengthy ramblings – that would totally suck. I admire you – becoming to know you, albeit very slightly and through shades of illness, through a tiny faraway window and through your own words.

The song I quoted is “Hallelujah” – sung by so many artists that even Leonard Cohen himself said “stop singing that song already” LOL – but I sang it anyway :). If you want to listen to my version – I sing only for the joy of doing so and as a tool to stay sane – you can listen (its free), if you wish, by going to SoundCloud online and searching HolyMac007 (pink rose as my image)- there you will find my other kind of voice. Peace and love to you.

Thanks for the blog comment. Maybe some day. For the time being, I am writing a novel – a few precious hours a day when I am well enough. It is my primary focus. Besides, although I will curb the length of my replies (a sigh of relief can be heard all the way to Canada lol) I feel content to “speak” to you and others here who seem to really understand this…this ball and chain we drag around minute to minute. Truly, yours are the first words I have read that fit so darn well into my own experience – no one else has ever come close. It is nice to know, albeit a stranger in another land, that there are individuals that really do get it…and may get me. Happy day to you, Sherry.

I will not claim to know a reason why there are so many EDS folks in this world. I know of of no good reason why myself & my loved one’s have to suffer. I do not know why I have to be without my identical twin sister who died of a massive heart attack in my hallway 3 yrs ago. May we blessed someday & know WHY???

Hell yes!! Preach, sister! I agree 100% and loved reading this post. I said a few of the same desires in my post, The Truth. If someone could heal with their mind, I would be somewhat better- I spent over a year doing the most honest, concentrated mind-healing-body stuff at least twice a day. And… I’m worse than ever.
I also loved Sherry’s reply. She had me at Hallelujah- Jeff Buckley’s version is one of the most beautiful songs ever recorded. X

As someone who is bringing a person with histamine intolerance (and probably Mast Cell Activation Disorder) into my life, thank you for being so candid about what it feels like to be that person. Thank you for the roadmap of traps and land mines that would be discouraging, rather than encouraging, which is the intent.

Thank *you* for sharing your life with someone who has chronic ill health. I don’t like my life – it isn’t one I would choose – and it never crosses my mind that someone would choose to share my life with me.

My blog can be very negative, for the simple reason that in the real world I’m actually very positive! Being around a moaning Minnie is no-one’s idea of a good time, so most people who are chronically ill keep it bottled up. As my blog isn’t read by my friends and family it’s the one place I can sound off about how miserable my life feels – I’m glad to have this space to be honest about the reality of chronic illness, so that I can be more upbeat the rest of the time 🙂 x

I am in awe!!! It’s so refreshing to hear it straight. Most of us just think this stuff, give our new age spiritual friends a wide berth and nod politely at the platitudes.

Thank you, thank you, thank you, from one diagnosed with cancer and tired of:- “eat only asparagus”, “you have a lesson to learn”, “why did you invite this into your life?” and best of all …. “I have a friend who had that, and they ………..” fill in the blank!! Would they do this if we had a broken leg?

Thanks so much for taking the time to comment. I think if we’re honest about how we feel we’re seen as negative, and what the hell’s wrong with that?! Having any kind of long term illness is crap and to pretend otherwise is just that…..pretence. There is nothing good about years of chronic pain and ill health or about facing death in the face. Nothing. Rather than being told it’s all somehow our fault what we actually need is a medal for coping as brilliantly as we do 🙂

Dear Jak,
I looked up your website after reading your article in the 25 percent magazine. Having an interest in spirituality, I clicked on that link, and was delighted to read your article above. Although we differ in the conclusions we draw- I think there may be items on my website that might grate with you :-)– as one who lives with illness, I relate to much of what you say. About a week ago I linked to this page and I shared it on Facebook and got a grateful response from a lot of people to your frank words and your honesty. (Mandy above was one of them.)
I also enjoy and relate to your comment above that you are a pretty upbeat person in your day-to-day life, and that any negativity you express here is part of your strategy for allowing yourself to remain that way in the world at large. You don’t come across as negative though, but as someone who, despite it all, is positively feeling her feelings and well in touch with her OOMPH.
Warmest wishes,
Katherine T Owen

Thanks so much for such a lovely comment Katherine 🙂 I’d noticed in my blog stats that I’d had some Facebook visitors, but you don’t know where on Facebook they’ve come from so it’s great to find out (I was imagining a whole group of people hating on me for dissing Oprah lol!). I’ll definitely have a look at your website when I have the time and mental energy. Jak x

Welcome!

Hi. Thanks for visiting my Blog. Posts are listed newest first, but if you’d like to start with my first rambling written in 2013 click here. I’m not a mast cell or EDS expert and have no medical training. I’m just sharing my own personal thoughts and journey. This isn’t a forum, more a diary, but polite, respectful comments & questions are welcome – click the ‘leave a reply’ link under post titles or scroll to the end of each post and use the comments box.

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